Wise Women Your guide to having a breastscreen

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1 Queensland Health Wise Women Your guide to having a breastscreen Be a Wise Woman! Finding breast cancer early could save your life

2 Wise Women Your Guide to having a breastscreen. Published by the State of Queensland (Metro North Hospital and Health Service), April 2015 This document is licensed under a Creative Commons Attribution 3.0 Australia licence. To view a copy of this licence, visit State of Queensland (Metro North Hospital and Health Service) 2015 You are free to copy, communicate and adapt the work, as long as you attribute the State of Queensland (Metro North Hospital and Health Service). For more information contact: BreastScreen Queensland Brisbane Northside Service, Metro North Hospital and Health Service, PO Box 227, Virginia Business Centre, Virginia QLD 4014, Doreen.orchard@health.qld.gov.au, phone / An electronic version of this document is available at Disclaimer: The content presented in this publication is distributed by the Queensland Government as an information source only. The State of Queensland makes no statements, representations or warranties about the accuracy, completeness or reliability of any information contained in this publication. The State of Queensland disclaims all responsibility and all liability (including without limitation for liability in negligence) for all expenses, losses, damages and costs you might incur as a result of the information being inaccurate or incomplete in any way, and for any reason reliance was placed on such information. Photography: Doreen Orchard Illustrations: Julie Haysom Funding: This resource was funded by a Metro North Hospital and Health Service, SEED Innovation Grant. Suggested citation: BreastScreen Queensland Brisbane Northside Service. Wise Women Your Guide to Having a Breastscreen. Queensland Health, Brisbane 2015.

3 Welcome to the Wise Women Book! This is a book about having a breastscreen and how to look after your breasts. At BreastScreen Queensland we do free breastscreening for women aged 40 and older. There is also a section for Family, Friends and Carers at the back of the book. We hope you enjoy the book and the pictures! Doreen and Nadja from BreastScreen Queensland Brisbane Northside Service. Thank you! This book has been made with the help of women and carers from Mercy Community Services and WWILD Women, Brisbane. A special thank you to Narelle for helping us to tell the story! Your help and support has been paramount in the success of this project and we are so appreciative of your time and effort in guiding us to create a resource that will help women to understand the importance of breast screening. You are a true champion that we are so lucky to call our friend. Thank you to BreastCheck Ireland. Elements of this resource have been adapted with permission from A Guide to Breast Screening (BreastCheck, The National Breast Screening Programme Ireland, 2014) to create Wise Women, your guide to having a breastscreen. To our illustrator, Ms Julie Haysom, thank you for creating the beautiful drawings for this booklet. You were able to capture our brief above and beyond our expectations. It was a pleasure working with you. We would like to acknowledge the Wise Women Project Steering Committee for their work and input into this Project. Their guidance and expertise helped shape the overall content and look of this resource. Our thanks go to the Clinical Director, staff of the BreastScreen Queensland Brisbane Northside Service and the BreastScreen Queensland Health Promotion Officers for their support, feedback and encouragement during the development of this Project. 1

4 Meet Narelle! Narelle loves scrapbooking, doing arts and crafts and fundraising for breast cancer charities. Narelle has a message for you - from one wise woman to another! Hi Wise Women Looking after our health is really important. As women, we have to look after our breasts too. Every two years I go to BreastScreen Queensland and have a breastscreen. It is just part of looking after my health, like going to the doctor or eating healthy food. It is free and easy to do and they are all ladies there. So don t be shy or scared if I can do it so can you! This book will help you to learn about having a breastscreen and how to look after your breasts. Remember finding breast cancer early could save your life. 2

5 What does healthy mean? We all want to be healthy. No one wants to be sick. Being healthy means our body is working well and we are happy inside. What makes you healthy? It is very important for each of us to look after our health. Eat healthy food and keep a healthy weight. Exercise every day 3

6 Don t smoke or drink lots of alcohol. Check our bodies for any lumps, bruises or rashes. 4

7 Visit your doctor for a check up. Have some tests if needed. Know your body! If you feel any pain or soreness you should tell someone. It is important to look at and feel your body when you are having a bath or shower. If you see or feel anything unusual like a rash, or a lump tell your carer, someone in your family or your doctor. 5

8 Narelle says It is important to know that not ALL lumps are bad. Having a lump in your breast does not mean you have breast cancer but you should see your doctor about it. What is cancer? Cancer is a disease people can get in different parts of the body. It stops that part of the body working properly and it can be painful. The body is made up of lots of cells. These cells are very small. Healthy cells are good for our bodies. Healthy cells Cancer cells Sometimes these cells become sick and they can turn into cancer cells. 6

9 Cancer can make the body very sick Cancer cells can grow in a woman s breast. We call this breast cancer. You cannot get cancer from someone else like a cold. People who have breast cancer have not done anything bad or wrong. Most breast cancers will be found in women who are aged over 40 years. If breast cancer is found early and when the cancer is small, doctors can start treatment before the woman becomes very sick. 7

10 How to be Breast Aware This is a very important thing that every woman should do at least once a month. Checking your breasts may help you to find breast cancer early. There is no special way to check your breasts and it won t take long. Make sure you are relaxed and in a comfortable place like your bedroom or bathroom. When you check your breasts ask yourself... Have your breasts got any rashes or itchy skin? Are your breasts a different size or shape? Are there any changes in your nipples? Do you feel any swelling in your breasts? Do you feel any swelling under your arms? Can you feel a lump? A lump might feel like a marble or a grape under your skin. Do you have any pain in your breast or under your arm? 8 If you find any changes in your breast tell your carer, someone in your family or make an appointment to see your doctor.

11 Here are 3 ways to check your breasts 1. Look at your breasts. If you know how your breasts look normally, you will notice any changes that may happen. A good time to look at your breasts in the mirror is when you have finished drying yourself after a bath or a shower. 2. Check your breasts when you are in the shower or bath. Using your hand press down gently all over each breast. Make sure you feel the area up by your neck and collarbone and also under the armpit. 3. Check your breasts while in bed. Check your breasts while lying down. Lie flat on your back, with one arm under your head. This flattens your breast and makes it easier to check. Using your other hand press down gently all over each breast. Then change hands and feel your other breast. 9

12 Remember! Being breast aware is all about getting to know what your breasts are like. Regular breast checks will help you feel good about looking after your body. If you feel or see any change in your breasts tell someone like your carer, friend or doctor. It is important that every woman from the age of 40 have a breastscreen every two years. If you are not 40 years old yet see your doctor for a chat about breast health. 10

13 Having a breastscreen In Queensland there are lots of special clinics called BreastScreen Queensland. Women aged 40 years and older can go to a BreastScreen Queensland clinic to have a free breastscreen. You need to make an appointment to come to this Clinic. You or your carer can call to make an appointment. 11

14 A breastscreen is a special x-ray of the breast to look for breast cancer. A breastscreen can show a breast cancer even when it is too small for us to feel or see. Once an appointment has been made you will get a letter with the appointment date and time. There will also be some forms to fill in. You must sign the form when you go to the Clinic. Your carer can help you with these forms. If you need to change the appointment just call the clinic and they will change it for you. 12

15 Getting ready for your breastscreen My checklist Make sure you have someone to go with you to your appointment. If someone needs to sign your consent form for you, ask your carer for help. Bring the forms with you when it is time to go to the clinic. If you have any questions or you are feeling nervous, tell your carer and the staff at BreastScreen Queensland they are always helpful and will take the time to make sure you are happy with everything. Make sure your forms are filled in correctly. What to do on your appointment day Have a shower in the morning Do not use: Deodorant Perfume or body lotions Talcum powder You can put deodorant on after you have had your breastscreen 13

16 What to wear To make things easier for you at the clinic this is what you should wear: A skirt or trousers with a top Arriving at a BreastScreen Queensland Service Your carer can go to the clinic with you. Give your form to the receptionist. She will check that all your details are right. She will ask you to sign your consent form. This form means that you are happy to have a breastscreen. 14

17 If you do not understand anything please ask a staff member or your carer so they can explain it to you. After the forms are filled in you will sit in the waiting room and wait for a radiographer to call your name. What happens now? The person who does your breastscreen is called a radiographer. All the radiographers at BreastScreen Queensland are women. When it is your turn for your breastscreen the radiographer will call your name. You will go with the radiographer into a special room where the breastscreen is done. This is a safe room and there is no need to be scared. Your carer can go in with you if you want them to. The radiographer will tell you what she is going to do and about having a breastscreen. 15

18 If you have any questions ask her now. She will ask you to take off your top and bra for the breastscreen. A breastscreen is the best way to check if your breasts are healthy. A breastscreen is like taking a special photo of the inside of your breast. Having the BreastScreen You will need to stand next to the x-ray machine. Tell the radiographer if you feel shy or scared so she can help you to feel better about having your breastscreen. The radiographer will help you place one of your breasts onto the shelf of the x-ray machine. 16

19 The radiographer will have to touch your breasts to make sure they are in the right spot. This is a helping touch. Another shelf will go on the top of your breast like in this picture. Your breast will be pressed for a short time and this might feel a little uncomfortable. If you feel any pain you can tell the radiographer to stop. She will need to take two x-rays of each breast. You will need to stand VERY STILL when the x-ray is being taken. Here are some tips to help you while your breastscreen is being done: - think of a happy place - sing your favourite song - count to 20 very slowly If you move it could blur the x-ray and it will have to be done again. 17

20 After the x-rays have been done and the radiographer is happy with the pictures she will tell you to put your bra and top back on. 18 You are now finished and can go home.

21 Getting the Results The doctors will read your x-rays and look for any signs of breast cancer. If everything is good and they are happy that no breast cancer can be found, you will get a letter in the mail. This will tell you your breasts are healthy. If you need more tests done, a doctor or nurse will call you (or your carer). If a cancer is found in your breast, the nurses and doctors will help you to get treatment and they will tell you what needs to be done. If no signs of cancer are found you will get a letter from BreastScreen Queensland. A letter can also be sent to your doctor if you wish. When do you need to come back? Most women will need to have a breastscreen every 2 years. You will be sent a letter in 2 years to tell you when you are due to have your next breastscreen. 19

22 Well done for reading this book now you are a Wise Woman too! Here are some important things to remember! Be breast aware check your breasts Tell your carer, family or doctor if you find any changes in your breasts If you are over 40 years of age have a free breastscreen every 2 years Don t be scared it s easy and they are all ladies there If we find cancers when they are small we can treat them before they make you sick. If I can do it so can you - tell your friends! 20

23 Information for Family Members, Carers, Friends and Health Care Workers. 21

24 Information for family members, carers, friends and health care workers Thank you for reading this guide. As a carer, family member, friend or health care worker, you are trusted by women with an intellectual disability to help them make the right decisions about breast screening. Breast cancer is the most common cancer diagnosed in Australian women. About 1 in 8 women will develop breast cancer in their lifetime. It is more common in women aged 50 and over. Women with an intellectual or learning disability should have access to breast cancer screening on the same basis as other women. How to use this book This book can be used in a variety of ways depending on the woman s individual needs. The book can be: read by a woman by herself read together with a woman to answer questions and discuss pictures read out loud to a woman, explaining the text and pictures used in a group learning session used as a reference book for the disability agency used by BreastScreen Queensland staff to explain the procedures / assist in the consent process The picture booklet, Wise Women: Your guide to having a breastscreen, has been developed for women with an intellectual or learning disability and aims to help women understand breast cancer screening as much as possible. It has been developed with the assistance and feedback of women with an intellectual disability in the community and disability support agencies. It is hoped that the guide will encourage women to join the free BreastScreen Queensland Program. It has been developed with funding from the Metro North Hospital and Health Service SEED Funding Grants Program. This section Information for family members, carers, friends and health care workers is for those who care for women and includes necessary information on BreastScreen Queensland and what participation in breast cancer screening requires. Acknowledgements: Wise Women: Your guide to having a breastscreen has been adapted with permission from A Guide to Breast Screening (BreastCheck, The National Breast Screening Programme Ireland, 2014). The authors would like to thank BreastCheck Ireland for the use of content from this resource. Thank you to Digital Graphics Café at for use of the Cute Owl border featured on the Wise Women Posters. 22 The Wise Women Guide has been developed with the assistance and collaboration of the women and staff from: Mercy Community Services Disability Services and WWILD Women Thank you very much you are indeed Wise Women! 1. BreastCheck, The National Breast Screening Programme, Ireland. (2014). A Guide to Breast Screening. Retrieved fromhttp:// bcheck/ documents/guide-tobreastscreening.pdf.

25 What is BreastScreen Queensland? BreastScreen Queensland is the only nationally accredited breast cancer screening provider in Queensland. We have been providing Queensland women with quality breast cancer screening services for over 20 years. We provide free breast cancer screening to women aged 50 to 74 years as this is the age group most at risk of developing breast cancer. However, our program also accepts women in their 40s or 75 years and over. A doctors referral is not required. The BreastScreen Queensland Program aims to reduce deaths from breast cancer by finding and treating the disease at an early stage. Refer to the contacts section for Information about your local Service Locations. Appointments can be made by phoning For more information visit What is a breastscreen? A breastscreen (or mammogram) is an x-ray of the breasts to look for breast cancer. Going for regular breastscreens means that any unhealthy changes will be found as early as possible. At this stage, breast cancer is easier to treat and a woman has a high chance of a good recovery. What happens at a breast screening appointment? The appointment takes approximately half an hour, although it may take longer for a woman with special needs. To have a breastscreen the woman has to undress from the waist up. At most services the carer can go into the screening room with the woman. Please check with your local service when booking the appointment. The radiographer will help the woman to place her breast on a small shelf, called a plate on the x-ray machine. Another plate will then be lowered on top of the breast and firm pressure is applied for about 10 seconds. The pressure is necessary to get the best possible x-ray image. It may feel slightly uncomfortable - like getting a blood pressure check. Appointments are with a female radiographer. Group bookings can also be arranged as sometimes women prefer to come with other women and their carers. Please speak to our service to arrange a group booking. How long does it take to receive results? We will post the results within two weeks. 23

26 What does it mean to receive a call back? Please don t worry. Some women will be called back for more tests because the breastscreen showed an abnormality. For most of these women, the breastscreen is found to be normal and breast cancer is not found. Approximately 45 in every 1000 women screened will be called back for further tests. This happens more often for women having a breastscreen for the first time because there are no previous x-rays to compare with. How often will a woman be screened by Breastscreen Queensland? Women are invited back for breastscreening every two years until the age of 74. After that time reminder letters will not be sent but the woman can continue to have a breastscreen if she wishes. Even if a woman has two-yearly breastscreens, it is still important to be breast aware because breast cancer can develop at any time. If a woman or her carer notices a change in the look or feel of her breasts, she should see her doctor without delay. What if a woman is under 40 years of age? We do not screen women younger than 40 for several important reasons: there is no current evidence that screening mammography is effective in detecting early stages of breast cancer in this age group there are concerns about the effect of regular mammograms on young breast tissue, and young breasts generally have denser tissue which makes it difficult to see breast cancer It is important however for women of all ages to maintain good breast health. All women need to be aware of the normal look and feel of their breasts. If your family member / client finds a breast lump, nipple discharge or any breast changes that concern you, please contact their doctor without delay. Support for women with a disability Our staff understand that feeling scared or nervous, difficulties with mobility, undressing and dressing, coordination and speech issues may deter some women from having a breastscreen but our experienced female staff are only too happy to help and will do all they can to put anyone at ease. Just let us know when booking the appointment if the woman will require extra time or has any special requirements. We are also able to change an appointment if a woman is unable to attend on the set day. As one of our radiographers says, We all have good days and bad days, and we understand if a woman needs to change her appointment. If you would like to discuss any concerns prior to an appointment, contact BreastScreen Queensland on and ask to speak to one of our specially trained nurses. The nurse will be able to advise which Service will best meet your needs. Most of our screening and assessment services provide: Group bookings Allocated disabled parking spaces and/or nearby drop off zones Wheelchair access Extended appointments if additional time is required Assistance from a clinical nurse if required Support from a carer if wanted Liaison with local disability services if needed 24

27 Our Health Promotion Officers can also provide free breast cancer education sessions for groups, health worker training and information resources. Guide and assistance dogs are also permitted to accompany women into the mammography room. Deciding about breastscreening Benefits: Preventing deaths Having a breastscreen every two years prevents deaths from breast cancer. Breastscreens can show very small breast cancers before they can be seen or felt. The earlier breast cancer is found, the better the chance of successful treatment and recovery. Less invasive treatment Women who have breast cancer that are found through a screening mammogram are less likely to have a mastectomy (have their breast removed). They may also have more treatment choices. Peace of Mind The vast majority of women who have a screening mammogram will get a result of no evidence of breast cancer and will feel reassured. Risks: Finding and treating cancers that may not have become life-threatening. Most breast cancers that are found through BreastScreen Queensland would grow and be lifethreatening if they were not treated. However, some breast cancers that are found and treated may not have become life-threatening. At this time, it is not possible to tell exactly which breast cancers may become lifethreatening and which breast cancers may not. Further tests done but breast cancer is not found Some women will be called back for more tests after a breastscreen because the mammogram showed an abnormality. For most of these women, the mammogram is found to be normal and breast cancer is not found. Breast cancer is present but not found Breastscreens are the most effective test for finding breast cancer early. However they are not 100% accurate. There is a small chance that a breastscreen will look normal even if a breast cancer is present. Deciding not to screen For some women choosing not to have a breastscreen is an appropriate decision, particularly if the experience is likely to be too traumatic for the woman, either mentally or physically. It is recommended that this decision is discussed with the woman s General Practitioner. To help with making this decision, to attend for breastscreening the woman will need to: Travel to the BreastScreen Queensland Service Have enough mobility to get into position for the mammogram Have sufficient bodily control to stay still for the x-ray 25

28 Consent for breastscreening The booklet Wise Women: Your guide to having a breastscreen is designed to help women understand breastscreening and to help them to consent for the procedure. It is recommended that a health professional or carer work through the guide with the woman prior to attending for the appointment. Consent checklist Before the woman has her breastscreen written consent must be received and witnessed by a BreastScreen Queensland staff member. For consent to be valid, it must be given by a competent adult. Can your family member or client give consent? 26 Yes - The consent form can be signed by the woman at the BreastScreen Queensland Service. No See below If a woman does not have capacity to consent to screening, consent must be given from a legally authorised decision-maker (in accordance with the Powers of Attorney Act 1998 and the Guardianship and Administration Act 2000). Who can sign for these women? 1. The woman s Power of Attorney - if she has one. During the consent process, the guardian or attorney will need to accompany the woman. They will need to provide proof of the Enduring Power of Attorney. 2. If the woman does not have a Power of Attorney, a statutory health attorney can provide consent on her behalf. The statutory health attorney can be one of the following: a spouse a non-paid carer a close friend or relative 3. If there is no statutory health attorney, then the Adult Guardian may act on behalf of the woman. The Adult Guardian is an independent officer appointed by the government to protect the interests of people with impaired capacity. Please contact the service if you think you will need an Adult Guardian. Feedback Feedback about these resources or about our service is always welcome. Please feel free to complete our Wise Women resource online evaluation survey by using the following links: - for Carers, health professionals or anyone who has helped someone read this book. - for any wise women or you can contact us by , mail or telephone on the details provided.

29 Thank you for your support. 27

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32 Participants from WWILD Service and Mercy Community Services Disability Services having fun making owl magnets at a planned Activity Day in January Feedback collected from these participants formed the basis of the Wise Woman resource. Their ongoing support has been crucial in the development of this Booklet. Phone : Early detection could save your life

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